The ME/CFS Research Collaborative | “an extraordinary achievement to bring together such diverse views” | 30 April 2013

May 2, 2013

From the “Phoenix Rising” blogsite, 30 April 2013. Opinion piece by Simon McGrath.

Last Monday, 22 April, saw the launch of the new UK Chronic Fatigue Syndrome/Myalgic Encephalitis Research Collaborative (CMRC). Set up by Stephen Holgate, MRC professor of immunology, and backed by the UK’s main research funders (MRC, Wellcome Trust and NIHR) it aims “to create a step change in the amount and quality of research into chronic fatigue and ME”. The launch featured some eye-catching provisional results that got good media coverage, particularly the study from Newcastle showing differences in lab-cultured muscle from CFS patients versus healthy controls. And an fMRI study found that patients had to use more brain regions to accomplish the same mental tasks as controls, confirming earlier work in this field.

Not everyone is happy

What’s not to like? Well, although it’s backed by most ME charities and almost all the UK’s biomedical researchers, the collaborative is deliberately a broad church including all types of research, including psychological research. And that has upset a good number of patients (as you can see on this thread: “read and weep…” was one pithy objection).

The ME Association acknowledges these concerns, but its Chair Neil Riley argues:

“The Research Collaborative is a big tent covering a wide range of views on causation, definition, epidemiology and management. We believe it is far better to be inside the tent discussing and debating these issues – as happened during the discussion session on Monday – than sitting outside where we would not have a voice. …Provided the Collaborative drives forward and promotes research into the biomedical causes of ME then we shall be in there, taking an active part and supporting its efforts.”

Action for ME, AYME, the Chronic Fatigue Syndrome Research Foundation, The ME Association and ME Research UK all agree. The most significant ME charity choosing to remain outside the tent for now is Invest in ME, who have voiced their scepticism, arguing that what’s needed is exclusive focus on biomedical research.

Nonetheless, it was an extraordinary achievement to bring together such diverse views into a single collaborative. As Stephen Holgate says, “It is the first time this has ever been done anywhere in the world—to get buy-in from these different communities”.

A new era of Research in the UK?

“a field that is in desperate need of new science“
_ Stephen Holgate

For the last twenty years, the study of CFS in the UK has been dominated by researchers with a biopsychosocial perspective, so it’s notable that the CMRC emphasises the need to do things differently. CFS is “a field that is in desperate need of new science”, says Stephen Holgate. At the meeting, he highlighted several new areas and opportunities:

* The application of state-of-the-art research methodology, including Genomics, Proteomics and Metabolomics.

* Using the new Networks approach as powerful tools for integrating and modelling biological data. This systems-based medicine approach focuses on how biological systems interact within the body, rather than looking at changes in individual genes or proteins. Nancy Klimas’s Neuro Immune Centre in Florida, with Gordon Broderick providing network modelling, is a great example of this.

* Emergence of large collections of biobanks. eg The UK ME-CFS Biobank and the CFI bio-bank in the States. Such well-characterised patient groups, with clinical and biological material, open the way to large-scale studies probing any number of biological mechanisms.

* Holgate also wants to engage a wide range of new fields such as maths and environmental science who could all add to the party.

This looks to me like an agenda for cutting-edge biomedical research, particularly as he says:

By coming together in this way, the application of state-of-the-art research methodology… will greatly increase the chance of identifying pathways linked to disease causation and novel therapeutic targets.

As he’s said repeatedly in recent years: “The key to success will be the engagement of scientists outside the field”, drawing new blood into CFS research, bringing insights from other diseases, and encouraging young new researchers to study ME/CFS. Similarly, the MRC stresses the importance of proposals for research funding to include at least some researchers new to the field. And the MRC, who were at the launch, has a highlight notice encouraging specific biomedical areas, including neuropathology and immune dysregulation.

One other important area discussed was heterogeneity and case definitions, which is a big issue for the whole field. Stephen Holgate referred to CFS/ME as a ‘complex group of conditions’ ie multiple conditions with different aetiologies, and so ‘phenotyping’ – dividing patients into different groups on the basis of clinical information, or even biomarkers – is a priority too.

How will the new Research Collaborative make a difference?

It’s still very early days for the research collaborative and the organisers hope that many new researchers will join the CMRC and help shape its future. However, it’s already been agreed that there will be quarterly meetings between researchers and funding charities, divided into four different streams. The content of those streams will be decided at the first meeting of the CMRC on May 22nd. This meeting will also firm up research priorities, and a fundraising drive will be on the agenda too. An annual CMRC science conference is also possible, but with such a new organisation, much remains to be decided.

Stephen Holgate knows that some patients will continue to doubt the value of the new Collaborative, and anything he says is unlikely to change their minds. However, he hopes that the efforts of the collaborative, and ultimately the results of new research stemming from it, will persuade those patients that this venture will be making a big contribution to understanding ME/CFS.

Simon McGrath has a science degree, and has watched not much happening in ME/CFS research for a long time, but now thinks things are finally kicking off. He occasionally tweets on research: follow @pSimonMcGrath

6 thoughts on “The ME/CFS Research Collaborative | “an extraordinary achievement to bring together such diverse views” | 30 April 2013”

  1. I think the time for sincere judgement will be maybe a year from now. That’ll be the time to ask, ok what has the MEA got out of this, is it working?

    For now, it’s way too early, better to be optimistic. There may be opportunities to help the MEA advance the patient interest with patient collaboration.

    There’s a fine line, between principle and utilitarianism. To those you oppose, an invitation to reason is a little more appealing than an invitation to villainy.

    But lets face it, there has been some shoddy research, yet another name has come out to bury PACE before the FDA (Dr Rowe). Everything that is built on the heinous assumption that it is some kind of evidence base must be challenged and de-legitimised at every turn. The future of ME research cannot be ceded to whomever has power over the latest press release.

    The SMC has to stop blowing into that dog-whistle of researcher repellent, it has transferred the suffering of researchers into the suffering of patients. Any justice there might have been has long since dried up.

    Good luck MEA, keep us informed!

  2. I think MEA should be at the table, and I agree, Matt, that that doesn’t mean they should give in to the fake science. Quite the opposite. They must speak up against any fake science that is attempted within this collaborative.

  3. They must speak up against the fake science that has already been done too.

    PACE and FINE must be publicly discredited, shown for what they truly are, and all publications pertaining to them retracted.

  4. Will the ME charities need to develop a new anatomical feature; namely, eyes in the back of their heads? Good luck to everyone who keeps hanging in there and grinding away for us all. We could do with new science, medical integrity and high quality research.

  5. I am troubled by the charter’s gag clause which is completely inappropriate as it bans “orchestrated campaigns against researchers.” I find that clause immoral since we are In a situation like the Tuskegee experiments. We must campaign against the abuse of ME patients conducted by researchers. I wish you would fight to get that whole clause removed.

  6. Why isn’t there a charter clause banning “lying and otherwise misrepresenting the facts about ME and conducting fake science with fake definitions of “CFS”, promoting dangerous ‘treatments’ such as GET or otherwise abusing ME patients”?

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